"We relied on the Vascular Birthmarks Foundation to provide us with the information, the contacts, the resources, and the support that we needed to get through this difficult time. Their theme, "We are making a difference" couldn't be more accurate. For us, it was all the difference in the world."
Jill Brown

Hi Linda
Just a note to say how wonderful I found the interview of you and Capital 9 news. Thanks so much for your devotion.
Gina

Hemangiomas are relatively common lesions in infants. Most go away spontaneously after one year of life and do not need treatment. Others require treatment because they cause significant symptoms such as pain, or difficulty with breathing, eating or ambulating. Steroids have classically been used to treat hemangiomas and help to shrink them in 1/3 - 2/3 of patients. Unfortunately, steroids have many side effects in babies so physicians have sought other ways to treat them. Recently, the use of propranolol, a heart medication, was serendipitously found to reduce the size of hemangiomas. It appears to have many fewer side effects than steroids but it is not yet known if it works as well as steroids. This study seeks to compare the effect and the side effects of propranolol versus steroids for treating hemangiomas that cause symptoms in infants. Read more here

Has your baby developed infantile hemangioma, also known as strawberry birthmark?

If your child has developed infantile hemangioma (also known as strawberry birthmark), a new research study may be of interest to you.
THIS STUDY MAY BE APPROPRIATE FOR YOUR CHILD IF HE/SHE:
· Is between 35-150 days old
· Has at least one hemangioma 1.5 cm in diameter
· Has not received previous treatment for hemangiomaRead more

$1.9 Million NIH Grant Supports Research
in the Most Common Soft Tissue Tumor in Children

A nearly $2 million grant from the National Institutes of Health
(NIH) will help investigators at Nationwide Children’s Hospital search for biomarkers that
may be linked to the development and outcome of hemangiomas, the most common soft tissue
tumor in children. Nationwide ... Read more (pdf)

Dr. Brandie Metz and colleagues from the Dermatology Department at the University of California, Irvine
are conducting a research study looking for infants with proliferating infantile hemangiomas (IHs) that
require medication. This study will evaluate the use of an investigational drug, V0400SB (also known
propanolol) in the treatment of hemangiomas. Click above for more information.

What is PHACE syndrome? A small group of patients with skin hemangiomas
(non-cancerous growth of blood vessels appearing as a type of birthmark) on
the head and neck may also have additional disorders associated with PHACE
Syndrome. PHACE refers to Posterior fossa anomalies (a structural brain
abnormality); Hemangioma (growth of blood vessels) appearing on the skin;
Arterial abnormalities (arteries are blood vessels in your body that carry
blood away from your heart); Cardiac (heart) abnormalities; and
abnormalities of the Eye. Your child may have one or several of the
abnormalities listed above as part of the PHACE syndrome. ).

To participate in this trial:
. Your child must be diagnosed with definite or probable PHACE
syndrome
(according to the 2009 criteria)
. Child must be 4, 5 or 6 years of age.
. You and your child must be available to travel to Children's
Hospital
of Wisconsin for scheduled outpatient evaluations over a one to two day
period (limited travel funds are provided by the study)
. No drugs are used for this study.

Why is this study important? While it is known that children with PHACE
syndrome may have abnormalities of the blood vessels in the brain of
structural brain abnormalities, it is not known what the significance of
these abnormalities is or how this affects children as they get older. As a
result, it is difficult for physicians to counsel parents of infants with
PHACE syndrome regarding future expectations or problems that may be
encountered in regards to development. This project is the first study to
look at specific areas of development in children with PHACE syndrome
through neurologic, psychological and cognitive evaluations. The data used
from this study will be used in the development of standardized testing to
establish clinical guidelines for the management of children with PHACE syndrome.

About 30 children will be enrolled in this study. We believe that the
information gained in this study will better characterize PHACE syndrome,
and establish guidelines for diagnostic neuroimaging of at-risk infants.
For more information about the PHACE study, please contact Dr. Beth Drolet:

Has your child been diagnosed with “hemangiomas”,
low levels of platelets, and gastrointestinal bleeding?

Your child could have a recently discovered disorder entitled multifocal
lymphangioendotheliomatosis with thrombocytopenia (see articles). This
disease has also been titled cutaneovisceral angiomatosis with thrombocytopenia
in the medical literature. Multifocal lymphangioendotheliomatosis with
thrombocytopenia (MLT) is a rare vascular disorder characterized by
multiple red- brown skin lesions, often misdiagnosed as hemangiomas.
Children with this disease have similar lesions in the stomach and intestines
which tend to bleed, especially during the first year of life leading
to very low blood counts. The children suffer from profound thrombocytopenia
(low platelet counts, below 30,000-50,000). Although a relatively newly
described entity, MLT was and continues to be misdiagnosed as blue rubber
bleb nevus syndrome, diffuse hemangiomatosis, Kasabach-Merritt phenomenon,
and hereditary hemorrhagic telangiectasia.

The Birthmark and Vascular Anomalies Center at Children’s Hospital
of Wisconsin has created an interdisciplinary task force to study infants
with vascular disorders and low platelets. The task force is a collective
group of clinicians and researchers from diverse pediatric specialties
including; dermatology, neonatology, otolaryngology, gastroenterology,
hematology/oncology, genetics and pathology. We have designed a registry
to collect information on all patients with MLT. The registry will address
many unanswered questions regarding risk factors and treatment options
for this rare disease. Dr. Paula North, who originally described this
disease, will review all biopsy specimens. This data will be used to
better understand the disease, design diagnostic criteria, and create
treatment guidelines. Ultimately the project will aim to obtain national
funding to study the cause of MLT and generate safe and effective therapeutic
interventions.

If you think your child has multifocal lymphangioendotheliomatosis
with thrombocytopenia/cutaneovisceral angiomatosis with thrombocytopenia
please contact us so we can learn more about this disease. This study
is approved by our Internal Review Board and we will send you a consent
form.

PHACES Study

PWS Study

Dr. J. Stuart Nelson and colleagues at the Beckman Laser Institute
and Medical Clinic (BLIMC) are looking for port wine stain (PWS) patients
who wish to have treatment using new technology.

Very often, the treatment of light pink and red PWS lesions commonly
seen in infants and young children can be extremely frustrating for
both the patient’s family and the physician. The reason for poor
response by such lesions to laser treatment is that the blood vessels
are very, very small, often less than 30 micrometers in diameter. As
a result, there is not enough blood available in these very small vessels
to absorb the incoming laser light. Little absorption of the laser light
does not induce adequate heat generation to sufficiently destroy the
vessel. One approach to overcome this limitation is to use a wavelength
of laser light that are maximally absorbed by blood. Use of the 577
nm wavelength would result in a two-fold increase in the amount laser
light absorbed as compared to the currently used 585 and 595 pulsed
dye lasers. Candela Laser Corporation has constructed a PDL operating
at a wavelength of 577nm. Our specific aim is to determine whether the
use of 577 nm laser light will improve PWS lesion blanching.

If you or a family member of a patient affected by a PWS wish to have
treatment using the laser technology described above, please contact
the Vascular Birthmark and Malformations Diagnostic and Treatment Center
Clinical Coordinator at the BLIMC, Andrea Giancarli, by telephone (949-824-4269)
or e-mail (afgianca@uci.edu).

Linda Rozell-Shannon is doing a research study for her PhD and needs
to know if there are any moms of babies with hemangiomas who had a placenta
problem and also had pathology done on their placenta so that the pathology
may be available for our medical research team to review. If anyone
meets this criteria: 1) had a baby with a hemangioma; and 2) had a placenta
issue; and 3) has the pathology still available on their placenta (probably
at the hospital where the baby was born), please contact Linda at vbfpresident@gmail.com
or use the contact form.

PS: If you were told you had a placenta problem your placenta was likely
"examined" and that would mean it may still be available in
a block of frozen tissue for further study. You may have to call your
ob/gyn office to verify.

Use of the Atkins diet for children with Sturge-Weber Syndrome

Principal Investigator: Eric Kossoff, MD

You are invited to join a study enrolling children ages 2-18, with
proven Sturge-Weber syndrome on an MRI, for a study of the Hopkins modified
Atkins diet for treating intractable seizures. Children must have at
least one seizure every month and have tried at least 2 anticonvulsant
medications to enroll. The study involves 3 visits to Johns Hopkins
over 6 months, which must be covered by the parent or insurance. Blood
and urine studies will be obtained at the first and last visits.

The Effect of Facial Hemangiomas on Psycho-Social Development

Elissa Uretsky- Rifkin, M.Ed. CMHC is conducting this survey for Hemangioma
ONLY.
This study has been approved by the Human Studies Committee at The Washington
University Medical Center in St. Louis, MO. If you are 14 years old
or over and would be willing to answer three short questionnaires, please
volunteer for this research study. This study is investigating the psycho-social
impact of growing up with an hemangioma on the face.

You must meet the following criteria to be in the study:

Your birthmark must have been diagnosed as an hemangioma (either deep,
superficial or mixed), NOT a Port-Wine Stain or other type of malformation.
You did not receive any treatment prior to age 14 to remove, lighten
or reduce the Hemangioma.
It must have covered at least 10% of the face (size of an egg) and been
visible to other people.
You must have attended a public or private school. (not home schooled)
You must be able to fill out the questionnaire without help from another
person.
All participants must sign a consent form, and if you are under 18 years
of age a parent or legal guardian must sign and approve your participation
in the study.
All information is strictly confidential. Your answers will be sent
to the scoring coordinator anonamously (without your identity disclosed).

More VBF News

Mission Statement: An international charitable organization that networks families affected by a vascular birthmark, tumor, or syndrome to the appropriate medical professionals for evaluation and/or treatment, provides informational resources as well as sponsors physician education, mobilizes medical missions trips, and supports research and programs that promote acceptance for individuals with birthmarks.

DISCLAIMER Information accessed through the VBF is presented in summary form in order to impart general information relating to the diagnosis and treatment of vascular birthmarks. Such information is not complete and should not be used as a substitute for a consultation or visit with your physician or other health care provider. Information accessed through VBF is not exhaustive and does not cover every aspect of vascular birthmarks. VBF makes no warranty as to the information's completeness, reliability or accuracy. Should you have any health care related questions regarding this matter, please see your physician or other health care provider promptly. Information accessed through the VBF is provided "AS IS" and without warranty, express or implied. All implied warranties of merchantability and fitness for a particular use or purpose are hereby excluded. VBF shall not be liable under any theory or indemnity. In no event shall VBF be liable for any damages, direct or indirect, and all other damages, direct or indirect, special, incidental, consequential or punitive, are hereby excluded even if VBF has been advised of the possibility of such damages.